Yesterday marked the beginning of Spina Bifida awareness month! So, in honor of all the amazing people I know who live with SB...here are some facts for you.
About 8 babies in the US are born with SB each day. I have also read 1 out of 2800 births.
SB happens in the first month of pregnancy. Most often it is connected with the folic acid level in the mom.
There are 4 different types of SB. The most severe kind is Myelomeningocele (which is the kind Maria has). It most often affects the spinal cord and nerves. Kiddos with this form of SB are usually operated on within a few days of birth
Neurogenic bladder and bowel are very common with more severe kinds of SB. This means that the individual usually does not have control over their badder and/or bowels.
90% of babies born with SB live full lives into adulthood. 80% have normal intelligence. 75% play sports or engage in other activities.
Still knowing these things, it isn't the same as living with a child with SB. We face challenges and we have amazing moments. We have to think outside the box often to figure out how to do certain things. We celebrate the small success and the big ones. We have a great support system of other families with children who have SB. They understand in a way that no one else does.
So, what has my amazing girl, who happens to have SB, been up to....well, she has been home just over 15 months. She continues to be bilingual. She got all A's and 1 B+ on her first quarter grades. She had growth over the summer in the area of reading when most kids regress. She is almost a teenager....and acts like it at times. She likes her friends and is always wanting to go to school dances. She has had fun this week with homecoming and is looking forward to the Walk n Roll for SB on Saturday. We are also preparing for a track clinic in the Chicago area next month. Maria is FINALLY going to get to try a racing chair. If she likes it and is good, we will start a training program and try competing at regional meets to see if she can qualify for the Nationals which are in our state this year.
Duct Tape Day
Posted with Blogsy
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